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Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review

Author

Listed:
  • Vanessa C. Delisle

    (McGill University
    Lady Davis Institute, Jewish General Hospital)

  • Stephanie T. Gumuchian

    (McGill University
    Lady Davis Institute, Jewish General Hospital)

  • Danielle B. Rice

    (McGill University
    Lady Davis Institute, Jewish General Hospital)

  • Alexander W. Levis

    (McGill University
    Lady Davis Institute, Jewish General Hospital)

  • Lorie A. Kloda

    (Concordia University)

  • Annett Körner

    (McGill University
    Lady Davis Institute, Jewish General Hospital)

  • Brett D. Thombs

    (McGill University
    Lady Davis Institute, Jewish General Hospital)

Abstract

Background Support groups are an important resource for many people living with rare diseases. The perceived benefits of participating in support groups for people with rare diseases and factors that may influence the ability to successfully establish and maintain these groups are not well understood. Thus, the objective of this scoping review was to provide a mapping of the available evidence on the (1) benefits or perceived benefits of participating in rare disease support groups and (2) barriers and facilitators of establishing and maintaining these groups. Methods CINAHL and PubMed were searched from January 2000 to August 2015, with no language restrictions. Publications that described the benefits or perceived benefits of participating in rare disease support groups or the barriers and facilitators of establishing and maintaining them were eligible for inclusion. Two investigators independently evaluated titles/abstracts and full-text publications for eligibility, and extracted data from each included publication. Results Ten publications were included in the scoping review. There was no trial evidence on support group benefits. All ten publications reported on the perceived benefits of participating in rare disease support groups. Three reported on barriers and facilitators of establishing and maintaining them. Overall, seven different perceived benefits of participating in rare disease support groups were identified: (1) meeting and befriending other people with the same rare disease and similar experiences; (2) learning about the disease and related treatments; (3) giving and receiving emotional support; (4) having a place to speak openly about the disease and one’s feelings; (5) learning coping skills; (6) feeling empowered and hopeful; and (7) advocating to improve healthcare for other rare disease patients. Several facilitators (e.g., meeting via teleconference) and barriers (e.g., getting patients and/or family members to lead the group) of establishing and maintaining these groups were identified. Conclusions Rare disease support groups are an important source of emotional and practical support for many patients. There is no trial evidence on the benefits of these groups and limited evidence on the perceived benefits and barriers and facilitators to establishing and maintaining them.

Suggested Citation

  • Vanessa C. Delisle & Stephanie T. Gumuchian & Danielle B. Rice & Alexander W. Levis & Lorie A. Kloda & Annett Körner & Brett D. Thombs, 2017. "Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 10(3), pages 283-293, June.
  • Handle: RePEc:spr:patien:v:10:y:2017:i:3:d:10.1007_s40271-016-0213-9
    DOI: 10.1007/s40271-016-0213-9
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    References listed on IDEAS

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    1. Sharon Lohr & Peter Z. Schochet & Elizabeth Sanders, "undated". "Partially Nested Randomized Controlled Trials in Education Research: A Guide to Design and Analysis," Mathematica Policy Research Reports 7dce2a40502a473eb80425d5e, Mathematica Policy Research.
    2. Ussher, Jane & Kirsten, Laura & Butow, Phyllis & Sandoval, Mirjana, 2006. "What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer," Social Science & Medicine, Elsevier, vol. 62(10), pages 2565-2576, May.
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